Curebie... I had never heard that insult before. A blogger I read, Jo Ashline who tells it like she feels it over at “A Sweet Dose of the Truth,” apparently pissed off a bunch of people and got herself labeled as a curebie (as well as a whole bunch of other things).
I guess she earned this by getting all excited that her kid (nine years old with Autism) read his first word, and she yelled out something celebra-trashy along the lines of “Autism can suck it!” Once I started reading the comments and ensuing posts, connected posts, and rebuking posts, I realized that the Autism community is fractured much like the Ds community.
A couple years ago I wrote a post questioning whether or not I would get the “cure” for my daughter if one became available. The answer turned out to be a solid maybe.
Kimani was just nine months old when I wrote that post. Now three years later, I have a different answer. A resounding “Heck yeah!” (as long as it didn’t come with risks... I don’t take risks with Kimani, I just don’t.)
Does that mean that I don’t love her or accept her? No, it means I can separate the effects of an extra 21st chromosome from the other 46. I don’t see a possible cure as something that would be a magical re-do where Kimani swallows a pill and wakes up with 46 chromosomes and an altered face. A “cure” would likely be something that ameliorates the day-to-day effects of that extra chromosome. Maybe it would take away the risk of Alzheimer’s and the inability to articulate speech and replace it with for twenty or so IQ points. That is why I support organizations like Down Syndrome Achieves that are advancing research, legislation, and education for people with Ds.
Does that mean I don’t view Down syndrome as a blessing? Yup, I don’t. I do, however, think of my daughters as blessings. You understand... I don’t see my daughters as Down syndrome, instead I see them as people who have some differences caused by Down syndrome. Some of those differences are quite endearing and valuable, and I consider myself fortunate to experience a close relationship with my girls. So while I have been blessed by the people in my life who have Down syndrome, I don’t think them having Ds in itself is a blessing.
You know what I would like a magic pill for? TBI... traumatic brain injury... the result of meningitis, or high fevers, or deep freezes. To all the pediatric neurologists out there, please please I beg you, make me a Curebie.
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